Dishing out my spoons...

Getting home from a trip is always catch up time. No matter how long or short the trip, I find myself taking forever to catch up with all the things I need to finish before I am back on track and life is normal again. Why is that?

Going on short trips can be just as hard on my body as long trips. In the last month, I have traveled twice, once for three weeks to Detroit to visit a childhood friend and once to Seattle for a four day weekend to visit my sister. It amazes me that I am more exhausted and miserable from the weekend trip than the three week trip. It seems unfair.

I did pack a lot of action and fun into those four days, where life was much more relaxed and quiet in Detroit as we all waited patiently for my little "nephew" to come into this world. But I guess my point, or should I say grudge, is that with RA, it seems that sometimes the best intentions seem to bite you in the ass in the long run. Not always, mind you, but for the most part.

As I was on my weekend excursion...my friend who accompanied me on the road trip made a great observation. I was tired from our morning activities of going to the Tulip Festival north of Seattle and we were planning our evening. I was unsure of how much I was going to be able to do as I was exhausted and in pain from the walking and rainy weather. Jocelyn, my friend, reminded me that I was saving my spoons for later that night. It reminded me of the spoon theory.

What is the spoon theory you may be asking yourself? It is the perfect way for me to explain to people of how I feel and how I deal with my RA. It was written by a fellow auto-immune sufferer and she nails it on the head. If you are interested in the spoon theory, please copy and paste this link into a new window...it will open your eyes to how one deals with RA.

Side note: this story is concerning someone who suffers from another auto-immune disease called Lupus. Although it is a whole different ball game when comparing the two diseases, both RA and Lupus are similar in the daily symptoms and challenges that patients experience.

(http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/)

I sent this story to most of my close friends and family. Now when I am with them...they joke with me about how lucky they are to share one of my spoons with me. I remind them, that it is I who is the lucky one!

So here is to all those days with only a few spoons...and to those we have a few extras to spend with great friends and loved ones!

Hope this post finds you in good health and humor!

Statute of Limitations...

Last night, as I was readying myself for my pending weekend in Seattle for a much needed girls weekend, I furiously began cleaning my room. What started out simply as a manhunt for all my dirty laundry turned into a spring cleaning of epic proportions.

By the third hour into it, and not much really accomplished besides a few loads of laundry washed and dried, I had successfully moved my bed from one side of the room to the other, dragged all my shoes and clothes from the closet, sorted several piles of winter clothes, spring/summer clothes, donation clothes, purses, old makeup, books I have read and still yet to read and spread them all over my room and the outside hallway. It was nearing bedtime, I was exhausted and in much need of a shower, and I hadn't really done much other than create a much larger mess than when I started.

Why is it that good intentions always go awry?

So, with only a little strength left in me, and American Idol almost over playing in the background as I cleaned, I hurried myself through putting things back into the closet, making my bed (as I had stripped the linens), finished up my laundry, and rushed into the bathroom to shower all the dust, dirt, and sweat that I had managed to encrust myself with during my cleaning frenzy.

I stood in the shower allowing the massaging pulses of the water to beat against my skin when things got a little blurry. I had to sit down. I quickly rinsed myself off and got out of the shower. I was lightheaded and things were beginning to really hurt. I was already in a little pain from earlier in the day as the weather front had moved in and it always makes for an achy breaky day.

I slowly walked into my bedroom and collapsed onto my bed and began to cry. I am not sure what prompted this sudden burst of emotion. It could be the fact that I am going to start my period next week, or that it was the end of a long day. But I think it was the fact that yet again, I overdid myself.

See, this is the thing about having RA. There are days when you wake up and you feel just awful. You can't get out of bed, you are in excruciating amount of physical pain, your depression is at an all time high, and nothing seems to go right. But then there are days when you are feeling invincible...like you could do anything and climb Mount Everest. Okay, so maybe not Mount Everest, but you get my drift. You feel good.

That was how I felt yesterday and probably why in my head I thought it was a good idea to try and tackle the cleaning project that I attempted. Granted my morning was not that great, but I didn't need pain meds, so in my determination, THAT is a good day. But with RA, things can change in a instant.

Physical limitations are the one thing I struggle with on a daily basis with this disease. I have always been a strong girl. Men and women alike have commented over the years about how strong I was physically, which is why I used to be one of the first people they would call when they needed help with moving and such. I have had good upper body strength...it was kinda my thing. Not my only thing mind you, but something that I was proud of...made me feel less dependant upon people. I rarely needed to ask for help, and it was nice. But now with the RA, that has all changed.

I am now to the point where I have to ask people to take the lids off things like the milk carton or the salt shaker, because I zero strength in my fingers. I cannot lift anything above my head that is more than five pounds. And moving boxes is simply out of the question. I have so many limitations now that I fell so helpless...sometimes useless. I know I shouldn't but I do.

Learning to live with these limitations in my life are secondary to the disease itself, but life altering none the less. Maybe that is why I cried last night. I don't like asking for help on simple things like changing the sheets on my bed or putting some old shoe boxes in the top of my closet. It seems unfair that I can go from one extreme to the next. But fairness is relative as most things are.

This reminds me of the Alcoholics Anonymous prayer they recite at the end of their meetings:

God grant us the serenity to accept the things we cannot change,
courage to change the things we can,
and wisdom to know the difference.

I need to accept those things that I cannot change. My new limitations in my life are not necessarily forever. They may change as I do. I just ask for the courage and strength to move forward and accept my new life. My life living with RA.

Wishing you all good health and happiness!

If God is a DJ...

Thoughts for this morning...

I woke up this morning around 6 am. Considering I was up until about three am reading a great book, that didn't give me much in terms of sleep. I looked outside to see if it was overcast, not that I needed to because all I had to do was try and move. I could think of only one word...ouch! Everything hurt. Not a good start to a new day.

That's how this works though, with the RA I mean. One day, like yesterday, I was great! I felt good, was in minimal pain, and my mood was excellent. Not to mention the weather was 82 degrees and not a cloud in the sky. Then today: overcast, rainy, and pain.

Sometimes I think that God is a sadist. Sometimes I miss being able to wear high heels. Sometimes I think this is all a dream. And SOMETIMES, yes sometimes, I sit back and think:

If God is a DJ
Life is a dance floor
Love is the rhythm
You are the music

If God is a DJ
Life is a dance floor
You get what you're given
It's all how you use it

God I love Pink! She rocks!

Okay, well I am off to bed, to try and get a few winks in before this day is a complete waste! Wish me sweet dreams...as I need it.

Wishing you all good health and happiness.
P.S. Don't forget to dance!

4/20...hehehe

Okay, so I know there may be those of you out there that have no idea what I mean when I reference 4/20 and giggle afterwards. To some it means nothing more than the 20th day of April, others it may be something simple like payday or even that they have a dentist appointment. To me, however, it is a devious reminder to what the pot smokers of the world like to refer to as a National holiday, in true oxymoron fashion (no, I am not calling pot smokers morons...I said OXYmoron....look it up; means something totally different).

When I was a young lass, obviously before I saw the error of my ways, I too dabbled in the consumption of the cannabis, weed, bud, ganja, Mary Jane, pot...whatever you want to call it; I smoked it. There is no sense in lying about it. I was a joker, I was a smoker, I was a midnight toker! I am not proud of it and there are many regrets that I have as a time or two I was in an incredible amount of danger and escaped barely with my life. I don't condone illegal use of marijuana nor do I promote its use. I am just telling my story on this nostalgic day.

So where was I, oh, right, I smoked it. Well 4/20 was a holiday for many. I remember back in the day when someone told me about its origin. Throughout the years I have heard numerous different stories about where the idea of 4/20 came from...where it evolved. I was told that it was the dispatching code that law enforcement use when busting a citizen for the use and possession of illegal marijuana. (Not true) I remember a story one time about how Janis Joplin, Jim Morrison, and Jimmy Hendrix all died on April 20 and it was a day of morning and celebration. (ah...no; that's just stupid) Someone told me, probably stoned out of their gourd and I am sure I believed them, that it was how many active chemicals there are in marijuana. (This one sounded logical, but nope...not right) I think I also heard that in England, avid true devotees in the consumption use of weed sit down every afternoon and smoke a bowl at precisely at 4:20 in the afternoon, come rain or shine(again pure fiction). Yep...I have heard them all.

But what is the truth? Where did this iconic mystical and unofficial holiday evolve and who is responsible for millions of people using this day as a Smoke Out holiday?

The last one is actually not that far from the truth, as it does actually have to do with time. I did a lot of research on this and "apparently," from what I have found through several sources, the idea of 4/20 came from a bunch of kids. Back in the early seventies in California at San Rafael High School, a group of kids who called themselves the "Waldo's," apparently because they sat on a wall outside the school, would meet up and smoke weed together. It became a code known simply as "420" which they could use in school, and no one was the wiser.

This is pretty funny to me because when I was a teen, many of us thought that we were so sneaky and smart because we too had meeting places where we would party. Ours were nothing as notorious to the world as "420" but we partied at places like "Broke Dick Creek" (pronounced "crick" from where I am from) and "Wide Ass." We could walk through the halls and yell "Party at Broke Dick Friday night" and the teachers could never figure it out. Oh, it eventually got busted but for a solid two years...we had out secret place and our secret code that everyone in our school knew what it meant.

I still hear about "Broke Dick" every now and again when I go home for a visit. It has been over fifteen years and people still talk about it. It didn't start a global movement like 4/20 but it was just another way that kids could stick it to the Man!

It made us special. It made us invincible. But most of all it made us Legends.

So here is to my "420"...may the mountain air and trees never speak a word of what it witnessed those many nights of sex, drugs, and rock n' roll...Here's to Broke Dick and Wide Ass...may you live proud and strong in our memories!!

I know this was a strange post, and I swear to you, I am not stoned...though sometimes I wish I were! Kidding. Sort of.

Wishing you all good health and happiness! (And for some of you...have a hit for me!)

Another day...another doctor

So today I am off to the doctor: my primary care physician. Well, at least the nurse practitioner who works in his office. I have a PCP, I will refer to him as Dr. Dumbass, who is nearing his late sixties, who is obviously in the race to retirement, and whom I cannot stand, so I never go and see him. I personally think the man is a quack and has lost his freakin' mind, but maybe that is a little harsh.

Trust me, my repugnance for the man is not without warrant. During my first few months being treated by him, after I was diagnosed with Rheumatoid Arthritis (RA), he didn't believe that I had RA. He thought I was simply depressed and a drug seeker. Strange really since I kept asking him to put me on something other than narcotics for the pain, because they were interfering with my daily activities.

Also, the first year of my diagnosis, I was RF negative, meaning that the Rheumatoid Factor in my blood (a protein test to determine the diagnosis of RA) was negative. 80% of all adults with RA are positive, and the other 20 %...you guessed it, negative. Well I was negative for the first year of testing. So Dr. Dumbass, in his infinite wisdom put that, with the fact that I was overweight and in a severe amount of pain, together and his genius diagnosis was that I was molested as a child and he wanted to know who "hurt" me! Yes, that's right folks. He actually asked me, "Who hurt you? Its okay, you can tell me."

WTF?? Was he kidding?

Apparently, when an overweight single female who is in physical pain which the doctors, or should I say doctor (as my Rheumatologist adamantly disagreed with his deduction), couldn't explain (because he is a Dumbass), they fit into a category of abused or traumatized individuals who are suffering from delayed post traumatic stress disorder. Seriously, I am not kidding. This was his diagnosis (which I made sure was NOT in my medical history since he had NOTHING to support such conclusions). One would think that I would never again return to such an incompetent person again, right?

Wrong...well not all wrong. Basically, I was confined by my medical insurance to stay with the same doctor because I couldn't find another doctor in my plan who was accepting new patients (believe me I tried). That's when I met Amy, the nurse practitioner, in my doctor's offive.

Amy is wonderful. She is kind and thoughtful. She takes her time to listen to me during my visits. She is everything that Dr. Dumbass isn't...and she gets paid probably a fraction of what he makes on an annual basis. Oh the injustice!

So, whenever a visit to my primary care physician is required, I schedule ALL my appointments with Amy. I have not had to see or listen to Dr. Dumbass in over two years (thank God for small favors). I have never told Amy what happened with Dr. D but I am sure she knows there is a reason I do not see him anymore. I can't be the only patient he has wronged. I do, however, still have to list HIM as my PCP on all paperwork, as Amy cannot be considered as my PCP. Stupid really, but them's the rules!

So this afternoon I am off to visit with Amy and give her my laundry list of ailments, most of which are connected or caused by the RA and/or medications, so that she can hopefully fix me. I say laundry list because I try to avoid going to the doctor as much as possible since I am required to visit my Rheumatologist every eight weeks, and I go to the cancer treatment center every six weeks for my Remicade infusion. I have had my fill of medical personnel and the like. I only go now if absolutely necessary, which my list has reached the end of the post-it note meaning only one thing...its time to make a visit to Amy.

So wish me luck...not that I need it with her. Hopefully I don't run into Dr. Dumbass today. I might have to tell him to buggar off! Somehow though, I don't think those would be my choice of words, but let's keep it clean, shall we!

Oh and one more thing...I tested RF positive within the second year. Put that in your pipe and smoke it Dr. Dumbass!

Wishing you all good health and happiness!

Story of a Hero's Pain

Thinking about medications this morning, as I struggle to swallow my morning regimen of pills prescribed by my team of doctors, I find myself pondering what it would have been like back in the day for people who suffered with RA. The study of this disease the the medications to combat it have changed significantly over the last decade or so and are continuing to change everyday. I feel lucky, as sick as THAT sounds, to have been diagnosed when I was because twenty years ago, if you were diagnosed with RA, there wasn't much that could be done but to grin and bare it.

This made me think about my journey with RA and others who are ravaged with this disease.

Three years ago in October, I woke up one morning and my life was changed forever. Sounds ominous, huh? Almost like the opening line in the newest movie trailer. But my life was no movie...oh there was drama, but nothing that would qualify as a blockbuster theatrical must-see...more like a Lifetime movie.

(Sidebar: This reminds me of a game my sister and I play. When we are on car trips we challenge one another to see who can come up with the most outrageous fictitious Lifetime Original movie title, as they can tend to be a bit preposterous sometimes. She won with "She Woke Up Pregnant." I know we shouldn't make fun as many of these dramas are based on true stories, but the Lifetime Network needs to be a bit less of a Drama Queen when promoting their films.....I'm just sayin'!)

But, as my story unfolds, in my hypothetical movie, I literally woke up one morning and was in pain. Everything hurt. I wasn't sure what was going on exactly, but I was only 29 and I hadn't done anything to warrant such pain. Every joint in my body hurt. It must have been the flu. At that time in my life, I had returned to college to finish my long overdue Bachelor's Degree at an elite college so stress was part of my daily routine, and being sick wasn't. I couldn't miss class so I wrapped my ankles and away I went...limping across campus to get to my classes. The next day, it was in both my wrists. I subsequently added ace bandages to them as well. As you can imagine, I was beginning to look like a really poorly wrapped mummy! I was limping and shuffling slowly and on the third day when I couldn't walk up the stairs to my first class (only one flight) I knew there was something not right. This wasn't the flu.

After I was diagnosed, I remember thinking that no one understood. How could they? Nobody but me knew how much pain I was in. Nobody could possibly understand how tired and fatigued I was. Nobody would or could get it! I was alone...alone and sick and in pain and sad.

My mother, God bless her, was very empathetic. Her father suffered with the disease until the day he died. He was described as one of the strongest men around, and no one wanted to mess with him. Built like the rock of Gibraltar and strong as an ox...that's what Grandma used to say about him. It makes me think about who my Grandfather was and what made him such a strong and determined man. He grew up surviving the depression with nothing but spare change in his tattered pockets, married later in life, fathered four children, and worked the majority of his adulthood in the damp darkness of a phosphate mine. I was very young when he passed and don't remember much about him other than he taught me to play cribbage, he loved to sing and play the fiddle, and was a highly irritable and severely grumpy old man.

Mom explains now that it was all the pain he was in from the RA. Apparently back then the only treatment for the disease was pain control. There were no TNF Inhibitors, DMARDS, or NSAIDS to alleviate or stop the debilitating symptoms of the disease. Grandpa took Anacin, which is apparently a combination of aspirin and caffeine. Right. Like THAT would help. I cringe at the thought. No wonder the man was in a bad mood. He was in excruciating pain with nothing to stop it. No thank you!!

So I guess I am lucky in comparison to my Grandpa who had only a daily aspirin to combat the daily symptoms of this disease: constant pain, swollen joints, severe fatigue, depression, lethargy, etc. I take close to 20 medications a day to combat my disease, and I STILL am irritable and grumpy sometimes. In my eyes, my Grandpa was an amazing warrior. He battled something that most people would never be able to do...and he did it with an Aspirin. The man was a hero. He has become one of my heroes. I could be angry and say that it is because of him that I have this disease, but rather I like to think that, because of him, I can fight this disease.

Thanks Grandpa!

Wishing you all good health and happiness!

New week...new beginnings

So it's Monday. Not a Manic Monday as the Bangles sang about, but rather just another day in my life. Being on disability and not working has a tendency to meld all my days together. If it weren't for the morning paper or my friends complaining about going back to work on Sunday evenings, I probably wouldn't even know when Mondays are here. Oh how I miss the days where I too was lingering through the house on Sunday evening, winding down from a long fun filled weekend with friends or family, doing laundry and getting myself mentally prepared to the week ahead.

It is silly, but I miss it. So many people say to me, "Gosh, it must be nice to not have to go to work." No, not really. I have had a job since I was 12 working in my mother's craft store, babysitting, or doing odd jobs for the neighbors. A real tax paying job since I was 16 and finally legal to work. I have never been unemployed in my entire life until now. People like me, don't NOT work. People like me are not built to be idle or to not crave interaction. We need to work. We need to move. So I have come to the only logical conclusion...I have the WRONG disease!

RA sets so many limitations. On days like this I tend to immediately begin lament on the days of the past, working in an office or running around chasing little ones as a nanny. I miss it and Mondays always seem to remind me of that. It is only until days like today, when I am sitting at my computer blogging to the world , that I actually think that I must be more optimistic. Mondays are beginnings of a new week. All beginnings are good. They are good by definition. A fresh start. So I remind myself to not sit and think about what I am missing in my life since the RA diagnosis, but rather to think about what this week may bring. What are my goals for the week? What would I like to accomplish? It doesn't have to be anything grandiose. It could be something as simple as writing that long overdue letter to my friend who is stationed in Iraq or cleaning out my dresser and removing the winter clothes, readying myself for spring. Simple yet productive.

So that is my advice for you and for me. New week means new beginnings. New beginnings means new goals. New goals means new accomplishments. And there ain't nothing bad with that, right?

Wishing you all good health and happiness.

Lessons from disease...

I set up this blog several months ago with grandiose intentions of logging on once a day and imparting to the world my innermost thoughts and feelings concerning living with Rheumatoid Arthritis. And then the flare came. As many of you know, that means that much goes by the wayside when we are down with a flare. But alas, I am back and ready to begin my blog. I hope that I can be more vigilant in keeping it up on a regular basis. Like I said in before, this is basically for me, but if it helps anyone by giving information or even comic relief, than I will be happy.

Okay so first and foremost some background information. I was diagnosed about three and a half years ago with Rheumatoid Arthritis. I was 29 and going to college at Gonzaga University to finally finish my degree that I had been putting off most of my early adulthood. I literally woke up on bright and shinny fall morning and could barely move. I thought I had the flu...boy was I wrong! After several dead-end tests and lots of antibiotics, pain medications, and anti-inflammatories, they finally gave me the final diagnosis of RA. AHH! OMG…to say the least. More like WTF? My grandpa had RA and from what I remember of him, he was mean and always grouchy. YEAH! Is that what I had to look forward to?

I had to eventually quit school, even though I got accommodations from the disability office on campus. It didn’t work. I could barely get out of bed, let alone attend class. Gonzaga is not exactly all that understanding when it comes to students missing class or needing special needs or exceptions. I ran into problems with almost all of my professors. I didn’t understand what the true consequences of this disease were let alone my family. How could I possibly expect my teachers and mentors to understand? It is an invisible disease for the most part. Many times you don’t necessarily “look” sick, but Lordy, are you ever.

That’s the problem with RA. Many people don’t get it. It took me a long time to get used to the limitations and implications that this disease has imposed. When I first got sick, I was talking to my roommate’s mother on the phone and she gave me one of the most important pieces of advice. She told me to be prepared to lose friends. What?? Are you kidding me?? I just lost my educational dreams, was just about to lose my job because I was no longer reliable to show up, and now she was telling me that I would lose the people in my life that I cared about and who I thought cared about me?? It was all too much. I didn’t believe her.

I was so naïve.

The loss of friends was actually not exactly accurate; my friends have been warriors and amazing caretakers in this ordeal…they really stepped up to the plate. No, in my case, I lost two of my siblings. My two older sisters, who have families of their own, let the green dragon of jealously get the better of them. The problem was my parents. My mother and father became especially attentive, caring and honestly a little overprotective of me. It must be excruciating for any parent to see their child, no matter the age, in so much pain that all she can do is buckle over and breathe with tears streaming down her face. Basically my diagnosis of RA not only changed my life, but it changed theirs too. They wanted to fix it. IT is something that cannot be fixed, but it didn’t stop my parents from trying.

They were awesome…scratch that…they ARE awesome. They took me to doctor’s appointments, helped me financially, they even let me move back in with them when I had to quit my job and could no longer afford my apartment. My dad asks me every morning how I am feeling and knows when I grunt that he needs to keep the daily teasing to a minimum; at least for the time being until my medication kicks in. My mother is always there to offer a back or neck rub, although many times I am too tender for her to even touch me, let alone massage me. But basically, my parents have made this a huge changing part of their lives like it is for me. They have been truly amazing and I will never be able to repay them for everything they have done for me.

That was the problem with my sisters I guess; they felt like mom and dad were spending too much of their energy and attention on me and my disease. They tried to convince my parents at one point that I was simply “faking” my symptoms and wasn’t “as sick as I was putting on.” Are you kidding me?? Why would anyone in their early thirties willingly quit school, quit their job, move out of their apartment into their parent’s guestroom, pack and store all their belongings in a storage facility, and be forced to be on welfare for medical and support? They had lost their marbles; I was convinced of it.

I mean, COME ON….are you kidding me?

But that’s the problem with this invisible disease. Many times I have no visible symptoms. There are times when I have swollen and red joints and days where I am so fatigued and stiff that I can barely roll out of bed to slowly hobble to the bathroom, hoping that I won’t pee my pants before I get there. I then force myself to eat breakfast immediately after going to the bathroom so that I can take my 17 pills that I am required to take every morning.

But then there are other days that I wake up and my stiffness and morning pain is a minimum which allows me to get moving quicker and the day begins and ends on a good note. Some days I can actually get out of the house and do things like go shopping at Target to get more Tylenol Arthritis and swing by the Walgreen’s Pharmacy on the way home…Yippee….what an exciting life. Something one should DEFINITELY be jealous of, right? Yah, right. (Please note the thick sarcasm.)

Basically, this riff if that is what you want to call it, has ruined my relationship with my sisters, severely strained the relationships between my parents and my sisters, and overall made me realize that our perfect little family is not so perfect after all. It has been difficult and emotionally draining, but I am getting through. Basically, I had to remind myself that these are the choices they are making and I have NO control or power over what other people do or think about you. I just brush it off.

It took several months for me to grieve over the loss of my relationships with my sisters, but I am healing. It has taught me that even though you are related to someone, it doesn’t mean unconditional love. I learned that people can disappoint you, especially if you put them to a standard that they are unable to achieve. But most of all I learned to appreciate and love even more those around me who are there for me, who love me and truly care about me. And I have to say, that the majority of them do not share the same blood as me. Family is not about blood lines. Family is something to be cherished and regarded with respect and honor. It is hard to find and even harder to hold on to. But well worth the blood, sweat, and tears!

I hope this wasn’t too dark or depressing. That is not how it was meant. I just wanted to relay to those out there struggling with any disease in their lives, RA or not, that it changes people. It changes the relationships that we had before the disease, and sometimes it strengthens those relationships that are there for the long run. Being struck with a chronic disease does not necessarily mean all bad. Sometimes you find a bright light at the end of the long journey…and it is worth it! Take it from me! :)

Wishing you all good health and happiness!